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Karissa's Kickin' It!

Karissa Haberkamp

Hi I'm Karissa! Here's just a little information about neurofibromatosis to get you started:Neurofibromatosis (NF) is a genetic disorder which most commonly causes tumors to grow on the nerves throughout the body. There are 3 classifications of NF: Type 1, Type 2, and Schwannomatosis. NF affects everyone differently and there are many different symptoms that can come along with it.

Now here is my story!!! It may be long, but that’s the way it is with NF.

I was born with neurofibromatosis [type 1]. When I was five I had a very scary seizure at school and when I was six we discovered that I had what is called a plexiform fibroma in my neck that extended into the spinal cord, compressing it. Without surgery, I could have possibly been paralyzed in the future because of this. This type of tumor generally cannot be removed because, though it is benign, it wraps around and intertwines with nerves and blood vessels. It can only be “debulked”, after which it may continue growing rapidly, slowly or not at all or start up at some future date. A neurosurgeon, orthopedic surgeon, and ear, nose, and throat surgeon worked for over 12 hours to get the tumor out of the spinal area with the hopes of then “debulking” the tumor. Due to great blood loss they were only able to remove the tumor from the spinal area. To shore up the damage to the bone they took some of my hip bone and fused my neck from occiput to C7 and put me in a special brace for 3 months. This “fusion” makes me unable to move my neck from side to side or up and down. This all occured at age six. When I was 10 it was decided that it was time to try debulking the tumor because it was eroding the bones in the front of my neck. At that time surgeons debulked it and used cadaver bone to strengthen and further fuse the neck. I was in ICU on ventilator for 6 days and put in a halo device. The fusion didn’t take well enough and I had two more surgeries in the next two months with bone eventually being harvested from my other hip. I was in a halo brace for 6 months.

Today the tumor still wraps around my carotid artery and shifts my airway, but I am doing well. However, in March 2013 we found out that my tumors do appear to be growing. They had been increasingly causing me more pain over the months since around the beginning of the year to the point I had to leave my job at the movie theater. I was put on 3 medications to help control the pain in August 2013. September 2013 I was put on a clinical trial for my plexiforms. I was extremely lucky to be part of this trial, although it is scary to think I was on it because my tumors are in a bad place and [were] growing. In the almost 2 years of being on the trial, I had about 28% shrinkage. We need awareness and funds so we can help fund more clinical trials like these. They are very hopeful and while it won’t get rid of my tumors, it may possibly stop growth or shrink them some more.Most recently, I went to the National Institutes of Health (NIH) and had a full body scan. We discovered a newer tumor there, possibly on my sciatic nerve in my right upper thigh. This tumor is one that they really want to monitor because of its growth and location.

Surgery may be an option in the future (and likely will be) but our greatest hope are drug trials. I still must get many MRIs of all of the tumors, my spine, and other places that must be monitored. In addition to the tumor in my neck, I also have tumors in my shoulder, side of face, and scalp (which thankfully, as of now, hasn't been a problem). I struggle with chronic pain weekly because of the tumors, migraines, slight scoliosis, and the relatively unknown dural ectasia. Often, medication does not help. My seizures (psychomotor) are currently under control with medicine but occasionally I will have a “breakthrough” seizure which makes me sick.

Not as big of a problem but still tough is my more recent diagnosis with executive functioning problems. I greatly struggle with directions (esp. driving), anxiety, planning, and other simple tasks that people take for granted. Today, I am 26 and trying to figure out exactly what I want to do. I went away to school for three years but struggled socially. I graduated with my bachelors online through Arizona State University. I'm living my life as normally as possible. Sure, I struggle a lot but I'm still a normal girl who loves to have fun. I just want to be a footprint in stomping out NF!

This is just one little slice of what NF is capable of doing. This is just my story. There are so many others out there that may have it worse off or better off. Many lives have been lost due to this terrible disorder. I have had friends taken too soon. This does not need to happen.Please help us. Help people like me, my brother, my dad, and my friends by donating or spreading the word. I am trying to beat my goal raised from last year so any donation helps! And if you have any other questions for me, don't hesitate to contact me and ask!Your time means the world to me. Thank you!

UPDATE: If I make it to my goal I will dye my hair blue for NF awareness.

Learn more about NF: nfmidwest.org/learn-about-nf/what-is-nfRegister for a walk: nfmidwest.org/get-involved/great-steps-for-nf